No idea what to do with my GP

Hmmmm… West Yorkshire NHS incompetence strikes again, or is the conspiracy theory correct that they are avoiding as many diagnosis as possible for financial reasons. I am not far from you and spent two and a half years battling with my GP. The process should be that they seek special funding, which in my case they messed up and wasted 6 months. Then they will likely refer you to Manygates in Wakefield for an assessment, but again, my GP didn't send the required information. This your GP has to do so you will have to go through them and Manygates will not deal with you directly, nor do they take private applications. There goes another six months. By this point they had referred me for some anxiety therapy, so said they could not re-refer me for an assessment while that was ongoing. There goes another six months. After having the anxiety therapy they still weren't listening, and I listed out all my issues, but still they weren't interested. I raised an NHS complaint who liaised with all parties and said I should ask my GP to re-refer me, which they said they could not do before. There goes another six months. But surprisingly having being contacted by the NHS complaints people, all of a sudden my GP was willing to re-refer me. However, for whatever reason, possibly including the fact that my GP stated that I could talk and made eye contact, they refused me an assessment saying I wasn't obviously positive enough to warrant taking up their limited time. At that point my GP said that was it, and there was nothing more they could do for me.

At this point I only needed to know for my own sanity so I went private, and although expensive was worth it. Two weeks later I had the answer I had waited years for and felt more at peace with myself than I ever have. Having said that, my GP said that if I wanted any support or benefits based on a diagnosis I would need that to be accepted by the NHS. Whether my private diagnosis is enough for them I don't know, but quite frankly I don't want their help and hope I never need it... In your case, you may need an NHS accepted assessment, so I would push for that first. Anything you give to them, keep a copy. If you don't hear anything when you should, chase them. If you're not happy, complain. Keep pushing and good luck.

Hello, re private assessments - mine was accepted by the nhs for 'support' post-diagnosis without a problem (i say support in inverted commas because actually there is precious little support available). In terms of benefits I don't know, however there I think you have to go through a needs assessment anyway, so even if you have an nhs diagnosis benefits aren't guaranteed. I would think the important thing is that your GP would accept the diagnosis.perhaps they might be able to recommend somewhere for you to go privately?

I think the main thing would be to be very careful where you go. I went to a diagnostician that is also used by the nhs so was pretty sure it would be OK. I think if the nhs uses that clinic themselves they can't really argue with it! Also I was more worried about getting support at work than anything and it seems to be fine there. 

Sorry to read about your situation with your GP. It's hard enough trying to even pluck up the courage to go and visit your GP and mention that you may have an Autism Spectrum Condition never mind being messed around not knowing what's going on.

Ideally you would have a GP who treats you as a patient and not just a number because this way your cries for help would be better understood. I am fortunate to have found a GP with whom I feel I am treated as a valued patient and I feel very lucky. I dread the day he retires or decides to change surgery because hes the most understanding GP I've ever had.

In my case it was a matter of being told off my wife I may be on the spectrum after living with me and putting up with me being difficult and also when I researched about autism all my struggles seem to come together like a puzzle. I decided to take an AQ test and scored 48/50. This prompted me to take other autism quizs and print off my results to show my GP.

I explained I think I may have an ASC and would like to get assessed. We had a chat about the benefits and how it would help me and he said he would look into it. Thankfully he called me a few days later and said he'd found me a place out of town and I was very grateful.

After waiting 18 months I was assessed and diagnosed with Aspergers. I feel very lucky to have such an understanding GP and also lucky to have a great ASC Clinic to assess me. 

I really do wish you all the best with getting a referral and with finding a specialist who is great at assessing for autism. 

Only advice I can give is don't give up until you get the answers you are looking for.

Thanks for your help. I’ve tried ringing LADS and BANDS but either no one answered the phones or it didn’t even ring. I might just go in person but they only accept referrals so they might not talk to me. 

With the GP, there are loads in the area but they all rated terrible, and the only few that aren’t are all full. So I would probably waste more time trying to find one and wait for a space. Aaah I’m not sure though. It’s all confusing. I think I might try speak to the services and then make a plan from there. 

They said i couldn’t email any information and I had to hand it by hand or through the post, but I might be able to speak to the autism services directly I’m not sure yet, thanks for your help 

Thanks for your help, I handed the paperwork in to the receptionist in person and did not send it by post this is why I have concerns about giving them more information. 

Thank you for explaining the funding, I was confused about why there were asking for funding when a service was already available so thanks. 

I was considering borrowing some money for a private assessment but someone told me I needed an nhs diagnosis to revive help or benefits. 

Thanks for your help, the problem is that I’ve already been to uni and failed, so I no longer have funding. I have to find my first year myself which means saving, and I can’t handle a full time job nor can I last longer than 7 months in a part time job so I would need the help to be able to get to uni to begin with :( 

Does your GP practice not have an email address? I emailed my GP the relevant documents, and within a week or so I was contacted by the ASD clinic that I was on the waiting list. I would speak with the reception desk, and ask about whether you can email the documents and have the GP forward them to the relevant recipients. You would still need to follow up to ensure they sent the information.

With the funding thing ~ GPs have to submit / apply for an Individual Funding Request (IFR) for each referral; to the Clinical Commissioning Group.

In one once sense GP's are like children trying to pester their parents (the CCG) for particular things at Christmas or upcoming birthdays.

In terms of losing 'patient information' ~ always keep a hard-copy of the information you send, and do it by recorded delivery, so that when it goes missing it is just a case of copying and sending it again ~ and keep mentioning that it is the second copy or the third as it can only happen so many times before it becomes beyond chance or reason.

Some people also recommend e-mailing as well as using recorded deliveries ~ but definitely keep hard-copies, and keep on sending the information as GPs do not always get their individual funding requests first time.

Remember ~ bureaucracy is a slow and cumbersome process in and of itself, and NHS funding is not currently sufficient to allow it to run smoothly or efficiently either.

Obviously ~ if you can afford a private assessment ~ things happen at a much more relaxed and expedient rate involving your choice of psychologist, assessment venue or locality, wheras the NHS is a post-code lottery completely and utterly. In some areas you can be assessed in a matter of months and in others it takes years.

May the force of the Aspie be with you and let not the dark-side of neurotypocracy previal ;-)

I'd contact LADS and BANDS to see what they suggest. My ref to my local assessment centre didn't go through my GP.

If you want to go back to uni have you contacted your prefered institutions to see what support they provide? At the university where I work we will pay for our students to have a private autism assessment, which can normally take place within a few weeks once you've enrolled. If you apply for DSA, we make that money back very quickly by charging the gov for your needs assessment, then mentoring so it's a win-win situation. Not all uni's provide this support though.

That sounds really stressful and frustrating. Could you try contacting the diagnostic service yourself and explain the situation? Another option might be to see a different GP. Of course you'd have to start from scratch but you might get lucky and get a more sympathetic GP who won't make you jump through hoops like this.